Gavin has had 4 CAR-T Cell Infusions since our last update. He has been doing great! The first night after infusion is a little rough with headaches, nausea and vomiting. However, we know what to expect so we embrace it (rather than fighting it) and just prepare for it. Nate is great with his documentation and we're pretty lucky that Gavin's symptoms and timing are predictable at this point. By the time the next morning comes around he tends to be back to his normal self. We do try to take it easy the next day and we have learned after his last two infusions that taking a car ride to go grab dinner isn't a good idea (he has vomited each time). So from now on we won't be going anywhere the day after infusions. 

We have our next MRI on Monday, January 3rd with an appt that afternoon with Dr Vitanza to go over the results. It will be great to get the results right away. Please pray and/or send positive thoughts our way for stability (or even better, more shrinkage). We definitely look forward to these MRIs for confirmation that we are doing the right thing. As many know, Gavin doesn't have any symptoms from DIPG so other than the MRIs it's really hard for us to gauge what his treatments are doing. Don't get me wrong, I know we are insanely blessed that Gavin isn't experiencing any symptoms of DIPG as I see how incredibly heartbreaking they can be.

We had an amazing Christmas with lots of family time. This is definitely a Christmas I will always remember and I know Gavin will too. This is his first Christmas that he is old enough to be aware of Santa, Christmas, Snow, etc. I love seeing the joy in his eyes with everything the holiday season brings. We are incredibly grateful for the many organizations and foundations out there that go the extra mile to make Christmas special for kids/families fighting cancer. They really are a true blessing.

On an unrelated side note....my (Ashlee) Facebook was compromised on December 20th and the hacker posted some terrorist stuff which immediately got my account disabled due to violating community standards. I immediately requested a review, but of course they are only reviewing the posts themselves....so I am not hopeful of a favorable outcome. Unfortunately once your account is disabled and a review is requested there is NO WAY for you to even contact Facebook to let them know your account was compromised. So it is extremely likely that my account will be permanently disabled for violating community standards because the reviewer will likely only look at the posts themselves and not at my account as a whole to see that I have NEVER posted such horrific stuff, nor have I ever been put in "Facebook jail" or been reported for violating community standards. SOOO in the mean time I am primarily using Instagram for my social media fix. Once a decision has been made on my Facebook is when I will either be back on my current profile or have to make a new profile.